The Importance of Learning About Your Health

Can you answer these three questions from the Brief Health Literacy Screen (BHLS): 

1. How confident are you in filling out medical forms on your own?; 
2. How often do you have someone help you read hospital materials?;
3. How often do you have problems learning about your medical condition because of difficulty understanding written information?

They appear simple. Many people I think would say Very, Never, and Never. But then if you add in the complication of not knowing English very well, a lower level of education, or just being sick and not clear headed at the time, those could change easily to: Not at all, Often, and Frequently.

What is the result of this kind of problem? Longer hospital stays for one:

"Using the BHLS screen, 20% (1104/5540) had inadequate health literacy. Patients with low health literacy had an 11% longer average length of stay (6.0 vs 5.4 days). Among men, low health literacy was associated with a 17.8% longer length of stay, and among women, low health literacy was associated with a 7.7% longer length of stay."

Longer hospital stays result in more exposure to germs, bigger bills, less rest for the patient (who ever gets a good night's sleep in a hospital) which ends up with more patient stress.

A recent study showed all this and more. Read it here.

So What Will It Feel Like?

Have you ever wondered what your next medical adventure really will be like? I mean how will they really feel during and afterwards? Nurses and doctors tell you things like "there may be some discomfort", or the ever popular "little pinch". Maybe you might feel "tired afterwards" or "possibly nauseous", or "a little pain" at the site that can be handled by "OTC acetaminophen or ibuprofen". But you really need prescription morphine for the pain, cant get out of bed for three days because of fatigue, or spend days running for the bathroom.

They never can tell you more, like the real truth. Bounded by HIPAA concerns or the simple fact that they have never experienced it themselves. Face it most of our medical professionals have never experienced the procedures they perform on patients. Sure they have had blood tests, injections, and more, but have they had your chemo protocol, surgery, or invasive procedure? Probably not.

Hence there is no way for them to tell you how you will feel before, during, and after, other than scared sh**less, because they really do not know.

I hate this. I have learned to research all medical procedures before I have them. I also look to friends and others who might have experienced it to find out what its like from the patient's perspective. (I am so 'healthy' my father, in his late 80s, asks if I have had any new procedure recommended for him.) I do not obsess about it but I do want a good idea of what something will be like.

I have learned some important things like do I really want to go by myself because I won't want to drive home. Or I can come close to passing out after in the knee injections. Or... the list goes on. So I have learned to ask questions and do my research.

Do you know whats in your medical records?

Do you ever look at your medical record? The hospital I go to just switched to a new system with an electronic patient portal. I can now go in and check it regularly. Since its been active for less than six months, its needs some more data but I can still see a lot of information including visit notes from doctors, test results, etc.

In recent years, I would go get printed out copies of test results anytime I wanted. At one point I became obsessed with my blood counts and created a spreadsheet of them and then found all my previous blood tests and now have records going back to 1998. And no, my red blood counts have not recovered since chemo and have remained low.

The other day the Wall Street Journal ran an article about taking charge of your medical records. And it astounds me how few people actually look at their medical records regularly.

This is important people! Medical errors can be fatal. I know I am allergic to benadryl and prednisone so if I have any kind of reaction, I need to make it clear they cannot treatment with either - and both are commonly used to treat reactions. Never mind the fact that I am also allergic to the '-cillins';  penicillin, amoxicillin, etc.

Knowledge is power. If your doctors are not able to electronically access your records, you need to make sure you keep them up to date with all your information including prescriptions, test results, procedures, and other doctor appointments.

I am skilled

In the past few days I have had the opportunity to share knowledge and decipher the oncology department. It turns out hanging out in the Cancer wing gives you ins on all sorts of special information:

• I know the receptionist - not just because she has been there since I started going there in 2007 but she also used to work out at the gym I go to where her cousin was a trainer. 
• I could explain about the special amenities in the oncology waiting room - the lunch and snack trays that come through earlier in the day.
• I know they do validate parking - its the least they can do for their oncology patients.
• They have the nicest nurses and staff who regularly go the extra mile (I'm  not saying that other nurses and staff don't do this but there seems to be extra concern and caring in oncology - this may be due to the frequency of patient visits).
• I know the best place to park which involves the least walking to get to the far away oncology wing.
• I know all the credible online resources and which ones to avoid. 
• I could spell most of the big words the hematologist shared with us.
• I knew what questions to ask to get to the next steps.

So I guess cancer gave me some skills. I am an educated patient in some respects. And it wasn't about my health.

Would you want to know?

I have blogged about this before. If you could do a genetic test to find out if you are likely to get an ailment and die of it, would you want to know?

I am still up in the air on this one. I was interested to read about a 21 year old woman who has the BRCA 1 gene, watched her mother die of cancer, but has decided she doesn't want to know. Her choice is to live an  unstressed like without the burden of the knowledge that she could die of cancer and what it would be like.

I can completely understand that point of view. Just because we can learn about our medical and genetic make up, do we have to learn it? I mean is there a benefit to living in ignorance and letting life happen around us with out having to learn what might or might not happen to us?

Why are we supposed to learn to see what the future brings? I have never been to a palm reading or a fortune teller or anything. I haven't really wanted to. Isn't it better to have life unfold as it may than to plan and learn and change ourselves to compensate for what we learn?

Hindsight in light is always 20/20 - we always look back and think back how we could have done better or differently or improved the outcome. But is it really to our benefit to think how we might have done things differently? Then we spend too much time ruing our decisions.

This would complicate my life immensely. If I knew then I would have too much time to over plan my life which would cause me to spend time ruing my decisions and over thinking everything.

I don't want to know.

The importance of knowledge

Why should you be an educated patient? Everyone tells you to go find out about your ailment. They tell you to look on line (but not too much and beware of Dr. Google) and find out what you have so you can ask your doctor the right questions. And where does that get you? Often on information overload to say the least, or with a queasy feeling in the put of your stomach as you try to figure out what it all means.

But what if you didn't look things up and do you own research and blindly listened to your doctors, ignoring your gut? Most of the time, you are fine because the doctors are smart, educated, went to medical school, and your ailment isn't that complicated.

But those times where you have a complicate ailment with a difficult diagnosis and poor prognosis? How important is your knowledge then? It can be very important. It can lead you to ask the better questions, bring more information to your doctor, and could even save your life.

Here is the story of Marci who died of brain cancer. But she was proactive and listened to her gut and found a better doctor who gave her the right diagnosis and therefore the right treatment. She also then did what she wanted to do in the remaining years of her life. This is what knowledge can do for you and why it can be so important.